This is the story of my family's journey with a lower leg birth defect. I hope the information I can share will help other parents who find themselves in a similar situation.

Friday, September 30, 2011

Baby Steps

First and foremost, I want to send out a thank you to everyone from nosurgery4clubfoot. I got so many wonderful comments and uplifting stories. Its nice to know that a lot of you could relate to my frustrations. I also appreciate everyones honesty about their treatment history. I saw that a lot of parents trusted the so called "Ponseti trained" doctors and are now dealing with relapses and surgeries. My mission over the next few weeks is to ensure that Nolan can get the best care I can possibly manage to arrange.

Over the past week I feel like I have at least made a little progress toward my little man's treatment. By the end of this clubfoot journey I am going to be an insurance manipulating machine! So there are currently 2 possible options: If the little dude decides to be on time/late I can switch to Aetna PPO insurance in early november with my work and be able to see Dr. Zionts in LA without a referral as early as Jan 2. As long as treatment isn't being delayed too long we would be ok (this is of course something I still need to discuss with the doctor.) Option number 2 I am currently trying to unfold. My husband has Anthem HMO which is accepted by Dr. Zionts in LA as well. However, since it is an HMO, I will need to have a referral by a primary care physician to be able to see that specific doctor. This poses a few questions, will a pediatrician here in SD be kind enough to refer me up to LA? Should I just set up a pediatrician in LA so I get referred to the LA doctor? And would this even be faster to get treatment then situation #1? I have heard 2 conflicting reports: One is that I cannot put an infant on either insurance until his SSN comes in. Once it comes and the paperwork has been filled out, the insurance will not take effect until the first of the month. Report 2 is the same as report one BUT the insurance is then back dated to the DOB and the insurance will backpay for any treatment. I like situation number 2 much better!!!! I have my husband making some calls today so we will see how all this unfolds.

So you might be wondering where this Dr. Zionts name came from. Well first it came from nosurgery4clubfoot. I've been trying to research every doctor here in SD to try to find someone who can effectively treat clubfoot. Kaiser says they have a doctor (Dr. Shoemaker) but he is not on the Ponseti certified list even though Kaiser has told me that this is the treatment they follow. I have an appointment on 10/18 to talk to him. Then there are 2 doctors at Rady's children's hospital that are certified but it does not look like they actually practice the method regularly. One doctor is Dr. Mubarack who seems like he was once on his game but now is over it (just an impression and I haven't actually talked to the guy.) The other is Dr. Maya Pring. She seems like an amazing woman but yet again she doesn't focus on clubfeet. She is a pediatric orthopedist who specializes in hip problems but can also treat a clubfoot if it comes her way. Another big red flag is the Rady's website that describes their "Ponseti Treatment". Everything seems right until the end. The last sentence on the page says most children have to get surgery at 1 month (tendonectomy) and then another at 8 months! We are still trying to set up a consult with one of these 2 doctors through a family friend who has some pull at the hospital. We are still waiting for an answer.

Now for Dr. Zionts...He seems wonderful! He is a clubfoot specialist who runs clinics in LA 3 days a week. Now here is a doctor I feel comfortable with. The name was given to me by some moms on the support group and I am extremely grateful to be pointed in that directions. The next baby step is figuring out how to get there.

On a separate note, my husband called our genetic counselor we have with Kaiser, Amy (who has been the most amazing person through this whole ordeal.) He explained how we were treated at our last ultrasound by the OB. Amy was appalled! She said that leg length is not something that can be diagnosed via ultrasound due to a high rate of error. She said the info hadn't even been given to her, and better yet we should have been referred to an orthopedist or Amy to explain what it meant and treatments. I guess the OB's education medical opinion of "nothing can be done" is not apart of Kaiser standard protocol. Now I'm a little confused...was the LLD just an error on the ultrasound or is the fact we could see it on the ultrasound mean it is pretty significant. We have another appointment scheduled on 10/4 to answer that question.

At least one good thing happened this week...I am still working! I am now training people how to take over my shift when I go on maternity leave so it is a lot of "lift this" and "can you grab that." The dizzy spells have stopped since I have been taking it easier. Now just 5 more weeks of work and 9 more weeks until my due date! I think the biggest shock of birth will be that there is a baby coming and not just a leg. With all the doctors appointments and constant googling I have to remember I'm having a son...not just a leg that needs to be fixed.

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About Me

I am a mom to a little boy born on 11/27/2011. Nothing about my pregnancy was easy but I'm afraid that the kind of motherhood life has set up for me will be even harder. I look forward to the challenges but I am dreading any more unexpected surprises.